Paediatric end-of-life care is challenging and requires a high level of professional expertise. It is important that healthcare teams have a thorough understanding of paediatric subspecialties and related knowledge of diseasespecific aspects of paediatric end-of-life care.
Trang 1R E S E A R C H A R T I C L E Open Access
Patterns of paediatric end-of-life care: a
chart review across different care settings
in Switzerland
Karin Zimmermann1,2,3*, Eva Cignacco1,4, Sandra Engberg5, Anne-Sylvie Ramelet6,7, Nicolas von der Weid8,
Katri Eskola1,9, Eva Bergstraesser3, on behalf of the PELICAN Consortium, Marc Ansari, Christoph Aebi, Reta Baer, Maja Beck Popovic, Vera Bernet, Pierluigi Brazzola, Hans Ulrich Bucher, Regula Buder, Sandra Cagnazzo,
Barbara Dinten, Anouk Dorsaz, Franz Elmer, Raquel Enriquez, Patricia Fahrni-Nater, Gabi Finkbeiner, Bernhard Frey, Urs Frey, Jeannette Greiner, Ralph-Ingo Hassink, Simone Keller, Oliver Kretschmar, Judith Kroell, Bernard Laubscher, Kurt Leibundgut, Reta Malaer, Andreas Meyer, Christoph Stuessi, Mathias Nelle, Thomas Neuhaus, Felix Niggli, Geneviève Perrenoud, Jean-Pierre Pfammatter, Barbara Plecko, Debora Rupf, Felix Sennhauser, Caroline Stade, Maja Steinlin, Lilian Stoffel, Karin Thomas, Christian Vonarburg, Rodo von Vigier, Bendicht Wagner,
Judith Wieland and Birgit Wernz
Abstract
Background: Paediatric end-of-life care is challenging and requires a high level of professional expertise It is important that healthcare teams have a thorough understanding of paediatric subspecialties and related knowledge of disease-specific aspects of paediatric end-of-life care The aim of this study was to comprehensively describe, explore and
compare current practices in paediatric end-of-life care in four distinct diagnostic groups across healthcare settings including all relevant levels of healthcare providers in Switzerland
Methods: In this nationwide retrospective chart review study, data from paediatric patients who died in the years 2011 or
2012 due to a cardiac, neurological or oncological condition, or during the neonatal period were collected in 13 hospitals, two long-term institutions and 10 community-based healthcare service providers throughout Switzerland
Results: Ninety-three (62%) of the 149 reviewed patients died in intensive care units, 78 (84%) of them following withdrawal of life-sustaining treatment Reliance on invasive medical interventions was prevalent, and the use of medication was high, with a median count of 12 different drugs during the last week of life Patients experienced
an average number of 6.42 symptoms The prevalence of various types of symptoms differed significantly among the four diagnostic groups Overall, our study patients stayed in the hospital for a median of six days during their last four weeks of life Seventy-two patients (48%) stayed at home for at least one day and only half of those received community-based healthcare
(Continued on next page)
* Correspondence: karin.zimmermann@unibas.ch
1
Department Public Health (DPH), Nursing Science, University of Basel,
Bernoullistrasse 28, 4056 Basel, Switzerland
2 Paediatric Palliative Care, University Children ’s Hospital Zurich, Children’s
Research Center CRC, Steinwiesstrasse 75, 8032 Zurich, Switzerland
Full list of author information is available at the end of the article
© The Author(s) 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/ ), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made The Creative Commons Public Domain Dedication waiver
Trang 2(Continued from previous page)
Conclusions: The study provides a wide-ranging overview of current end-of-life care practices in a real-life setting of different healthcare providers The inclusion of patients with all major diagnoses leading to disease- and prematurity-related childhood deaths, as well as comparisons across the diagnostic groups, provides additional insight and
understanding for healthcare professionals The provision of specialised palliative and end-of-life care services in
Switzerland, including the capacity of community healthcare services, need to be expanded to meet the specific needs
of seriously ill children and their families
Keywords: End-of-life care, Terminal care, Paediatrics, Neonatology, Child, Practice patterns, Retrospective studies
Background
Despite continued advancements in medical care and
improved (expected) survival, infant and childhood
deaths due to complex chronic conditions (CCC) or
pre-maturity are inevitable [1] Deaths during the first year
of life constitute approximately 50% of disease-related
infant and childhood deaths in developed countries, the
causes of which include perinatal complications,
prema-turity, or congenital anomalies [2, 3] Beyond the age of
one year, the three most common life-limiting CCCs are
neurological/neuromuscular and cardiovascular
condi-tions (including genetic disorders), and malignancies [4,
5] The majority of disease- and prematurity-related
deaths occur in hospitals, [6, 7], and for children dying
at home, hospital use in their terminal stage is high [1,
4] Symptom burden and reliance on medical technology
has been reported to be considerable [3, 8]
Circum-stances and characteristics of deaths, however, are
known to vary by age and medical conditions [1,4]
Paediatric palliative care (PPC) emerged as a medical
subspecialty aimed at meeting the specific needs of
ser-iously ill children and their families According to the
World Health Organization (WHO)“palliative care is an
approach that improves the quality of life of patients and
their families facing the problem associated with
life-threatening illness, through the prevention and relief of
suffering by means of early identification and impeccable
assessment and treatment of pain and other problems,
physical, psychosocial and spiritual” [9] More
specific-ally and as part of palliative care, the term end-of-life
(EOL) care refers to care when death is imminent [10]
Meeting the needs of affected children and their families
requires a wide-ranging and integrative approach from a
compassionate and skilled multidisciplinary team [11]
PPC and EOL care should be provided in all settings
where it is required [12]; although, specialised PPC
teams are mostly hospital based [13] A thorough
under-standing of paediatric subspecialties and related
know-ledge of disease-specific aspects of paediatric EOL are
needed This understanding should go beyond the
hori-zon of a single hospital and take into account the
heterogeneous settings where care can be provided
(tertiary settings, general hospitals, paediatric primary
care and in the community) There is not much evidence
on which to base best practice, and most existing studies focus on specific diagnostic groups or specific care set-tings [1,14,15] It was therefore the aim of this national study to comprehensively describe, explore and compare current practices in paediatric EOL care in four distinct diagnostic groups (cardiology, neonatology, neurology and oncology) across healthcare settings including all relevant levels of healthcare providers in Switzerland
Methods Study design
This retrospective chart review was part of PELICAN (Paediatric End-of-LIfe-CAre Needs in Switzerland), a na-tionwide study “to provide comprehensive information and to understand the current practice of EOL care (i.e in this study and similar to other studies, the last 4 weeks of life prior to death [16]) in paediatric settings in Switzerland (hospital and community care) and to explore and describe parental perspectives and the perspectives of the healthcare professionals involved” [17] Human Research Ethics Committees from the 11 Swiss cantons in which the study took place approved the PELICAN study Parents who had lost a child due to a cardiac, neurological
or oncological condition or during the neonatal period (independent of the underlying condition) in the years
2011 and 2012 were invited to participate Neonates <
24 h of life and patients > 18 years were excluded Information on how, where and when recruitment took place is described in detail elsewhere [18]
Setting and data collection
Data from all eligible patients, whose parents had consented to the review of their child’s medical chart, were collected in 13 hospitals, 2 institutions and 10 community-based healthcare service providers through-out Switzerland Among the 13 hospitals, there were 5 tertiary paediatric centres, 4 dedicated children’s hospitals, 3 general hospitals with paediatric units and 1 tertiary care centre with a neonatal intensive care unit
A multiprofessional PPC team was available in two ter-tiary paediatric centres and one dedicated children’s hos-pital; no paediatric hospices exist in Switzerland
Trang 3Data collection was conducted mainly by the first
au-thor, who also developed the coding manual and all case
report forms as well as instructing and supervising five
assistants, who supported data collection [19] The
coding manual was developed within the PELICAN
study group [17] and pilot tested with 10 children who
were treated in 5 different hospitals and died in the year
2010 In accordance with this study’s definition of EOL
care as care during the last four weeks of life, data
collection was restricted to the 28 days prior to the
child’s death All extracted data was entered into
secu-Trial®, a browser-based electronic data capture system
(InterActive Systems, Berlin, Germany) During the first
two months of data collection, 5 % of the medical
re-cords reviewed by one of the five assistants were
randomly selected and audited by KZ by performing a
dual review Any data entry discrepancies were checked
for its nature of assessment error No systemic data
entry errors were detected There were very few data
entry discrepancies and those that occurred were almost
always related to mixed documentation quality in the
medical records that left room for interpretation, e.g.,
change of do-not-resuscitate (DNR) order Emerging
questions around those inconsistencies were
continu-ously discussed among data collectors Variable
instruc-tions in the manual were revised as needed to ensure
the quality of ongoing data extraction and reduce the
likelihood of inter-rater discrepancies [19]
Variables
The following data were collected for this study: (1)
demographics (age, gender); (2) diagnostic information
(the underlying diagnosis primarily responsible for the
patient’s death, gestational age for newborns only, time
since diagnosis, and whether the diagnosis was made
prenatally); (3) circumstances of death (place of death,
occurrence of resuscitation, existence of DNR orders
and whether these orders changed during the last four
weeks of life, and treatment withdrawal); (4)
interven-tions (at least once during the last four weeks of life,
Yes-No: anaesthesia, e.g., surgery, imaging; ventilation;
central access device; enteral feeds) and medications
(number and types of medications were recorded only
for the last two weeks of life to reduce the time burden
related to reviewing the medical records); (5) symptoms
(presence of various symptoms); (6) hospital and
community healthcare utilisation (hospital days and
ad-missions, days spent at home, number of days and
hours, and types of care provided by community
services) We also assessed whether the treatment
ap-proach was documented as palliative care and whether
this approach changed during the last four weeks of life
A diagnostic chapter and code from the International
Statistical Classification of Diseases and Related Health
Problems (ICD), 10th Revision, online version 2016 [20] was assigned to each patient, based on the exact diag-nostic information extracted from the patient’s last med-ical report Coding was done by two independent appraisers to establish reliability and any discrepancies were discussed until there was consensus about the diagnosis All symptoms documented in the patient’s chart were recorded during data collection The ones most frequently reported were grouped into 20 symp-toms categories, based on sympsymp-toms most frequently reported in the literature [8, 14, 21] Symptoms that affected similar areas, e.g spasticity/dystonia for muscu-lar impairments, or agitation/irritability for behavioural problems, were grouped
Statistical analysis
Descriptive statistics (measures of central tendency and dispersion, frequencies and percentages) were used to explore and summarize all variables A binary logistic model with likelihood ratio statistics was utilised for two-tailed comparisons between the diagnostic groups
of variables with a binominal response (Yes – No) For count outcome variables, negative binomial regression was utilised to adjust for overdispersion [22] For vari-ables with a categorical response, equivalence of propor-tions between diagnostic groups was tested in contingency tables using the Pearson’s chi-square test or Fisher’s exact test when cell sizes were < 5 No measures
of missing value replacement were pursued Due to the multiple comparisons performed, we set a conservative p-value of < 0.001 to indicate statistical significance Stat-istical analyses were performed using IBM© SPSS© Sta-tistics 21 for Mac® (IBM Corp, Armonk, NY, USA)
Results
Of the 307 eligible families, 267 could be contacted and were invited to participate in the PELICAN study Of those, 147 families (55%) consented Two families lost twins resulting in a study sample of 149 neonates, children and adolescents (Table1) With neonates com-prising 38% of the sample, the median age at death was 0.5 years for the entire sample but substantially higher (Mdn = 8.4, range = 1.7 -17.4 years) for the oncology group The neonates' median age was 5 days (range = 1 -26) and substantially lower than age in the other diag-nostic groups (Table 1) Seven ICD-10 diagnostic chap-ters were represented in our four groups’ categorisation, with the highest variety found within the neurology group The median time between diagnosis of the life-limiting CCC (made after birth) and death for the total sample was one month (interquartile range [IQR], 0 – 6) Within the four groups, the median time between diagnosis and death was longest for the neurology group (Mdn = 6 months, IQR = 3 – 29) Diagnoses made
Trang 4prenatally, were significantly more frequent in the
cardi-ology group compared to the other groups (p = < 0.001)
and not present in the oncology group Information
re-lated to gestational age was missing for 5 neonates
(8.8%) and information related to diagnoses made
pre-natally for 2 patients (1.3%) (Table1)
Place and circumstances of death
Ninety-three patients (62%) died in an intensive care
unit (ICU), with the highest proportion of ICU deaths
occurring in the neonatology group (Table2)
Twenty-f-ive patients (17%) died at home, with the highest
proportion of home deaths occurring in the oncology
group Twenty-six patients (17%) received
cardiopulmo-nary resuscitation (CPR) within 24 h before death,
despite 15 patients (17%, n = 147) had a documented DNR order A DNR order was documented in 91 pa-tients’ charts (62%) Of those, 51 patients (57%) had a change of the DNR order within the last four weeks of life This change occurred most frequently in the neo-natology group (Table 2), often within hours before the child’s death For 78 patients (84%) of the 93 who died
in an ICU, death was preceded by a decision to withdraw life-sustaining interventions
Interventions, medication and symptoms
Patients underwent several interventions, suffered from
a variety of symptoms, and received a considerable amount of medication, as documented in their charts This information is detailed in Table 3 and Fig 1 Fif-ty-one patients (34%) received anaesthesia at least once
Table 1 Demographic and diagnostic patient characteristics
N = 149 (100%)
Cardiology
n = 19 (13%)
Neonatology
n = 57 (38%)
Neurology
n = 36 (24%)
Oncology
n = 37 (25%) Age at death, Mdn (range)
Gender, n (%)
ICD-10 chapter, description, n (%)
Time since diagnosisd
Na Not applicable, ICD-10 International Classification of Diseases, 10th Revision
a
Aplastic anaemia
b
Stroke included
c
Information was missing for some cases
d
Calculated from date of birth, even if diagnosis was suspected prenatally
Trang 5during their last four weeks of life, some patients more
than once and for different interventions The most
commonly documented interventions requiring
anaes-thesia were surgical interventions in 28 patients (55% of
the 51 patients who received anaesthesia) and diagnostic
procedures, e.g imaging in 27 patients (53%) The
over-all median and mean number of medications with orders
for standard daily doses and as-needed orders rose from
9 (range = 0 - 42), 12 (SD = 9.20) respectively during the
second-to-last week to 12 (range = 1 – 46), 14 (SD =
9.15) respectively during the last week For 133 patients
(89%) the last treatment approach was documented as
palliative The approach changed from curative to
pallia-tive during the last month in 88 patients (59%), most
commonly in the neonatology group and least
com-monly in the oncology group (90% vs 32%, p = < 0.001)
Information was missing for six variables related to
in-terventions and medication and ranged between 0.7%
and 2.7% (Table3)
Pain was the most frequently documented symptom,
and occurred in 110 patients (78%, N = 141), with no
significant differences between the diagnostic groups
One hundred and forty patients (95%, N = 148) received
some pain medication, most commonly opioids (93%),
followed by paracetamol (67%) Other common
symptoms included breathing problems (n = 107, 72%),
followed by behavioural problems such as agitation or
irritability (n = 89, 60%) Some symptoms, such as
respiratory secretion, fever, nausea/vomiting, coughing,
sweating, fatigue, drowsiness, anxiety (including worry and sadness), and poor appetite, differed significantly (p = < 0.001) between the diagnostic groups (Figure 1) Overall, an average of 6.42 (SD = 3.14) symptoms were recorded per patient Significantly fewer symptoms were reported in neonates (M = 4.39, SD = 2.15) com-pared to all other groups (p = < 0.001)
Hospital and community healthcare utilisation
Overall, our study patients stayed in the hospital for a me-dian of six days (IQR = 2– 19) during their last four weeks
of life, with the highest number of hospital days for pa-tients in the cardiology group (Table4) Nineteen patients (13%) had no hospital days: 11 of them (58%) from the on-cology group, 5 (26%) from the neurology group, 3 (16%) from the cardiology group, and none from the neonat-ology group Among the 130 patients who had at least one hospital day, 62 patients (48%) had one hospital sion, 10 patients (8%), and 2 patients (1%) had 3 admis-sions during the last four weeks of life Fifty-six patients (43%) had zero hospital admissions, meaning that those patients were hospitalised at the beginning of data collec-tion and remained there until their death or discharge Of the 57 patients in the neonatology group, 23 patients (40%) were born in a hospital with no ICU and had to be transferred to a referral tertiary hospital with an ICU Pa-tients from the other diagnostic groups were most com-monly admitted from home (Table4)
Table 2 Place and circumstances of death
Total
N = 149 (100%)
Cardiology
n = 19 (13%)
Neonatology
n = 57 (38%)
Neurology
n = 36 (24%)
Oncology
n = 37 (25%)
p-value
CPRb
DNR order
DNR order change within the last four weeks of life
PICU Paediatric intensive care unit, NICU Neonatal intensive care unit, CPR Cardiopulmonary resuscitation, DNR Do not resuscitate
a
Across the four groups, based on Fisher ’s exact test
b
Within 24 h before death
c
Across the four groups, based on likelihood ratio chi-square
d
Only applies to patients who died in an intensive care unit
Trang 6Seventy-two patients (48%) stayed at home for at least
one day, with patients from the oncology group having
the highest number of home days (Mdn = 24, IQR = 4
-28), followed by patients from the neurology group (Mdn
= 21, IQR = 4 - 26) Of the 72 patients who stayed at home,
36 (50%) received professional care from a
community-based service The provision of education and support to
empower the family was the most commonly provided
service, as documented by the care provider, and patients
from the neurology group received more care hours than
patients from the other groups (Table4)
Discussion
There are several principal findings in this nationwide
study examining patterns of care at EOL in four distinct
diagnostic groups: patients had a variety of primary
diag-noses, covering seven different ICD-10 diagnostic
chapters; 62% of all patients died in ICUs, with 84% of
them following a decision to withdraw life-sustaining
treatment; reliance on invasive medical interventions was
prevalent and patients were exposed to multiple
medica-tions; patients experienced many symptoms with an
average of six symptoms per patient; finally,
community-based health care services were involved in only half of
the cases of the 72 patients (48%) of patients who spent time at home during their last four weeks of life
Strengths and limitations
The study provides a wide-ranging overview of current EOL care practices in a heterogeneous real-life setting of hospitals, long-term institutions and community health-care organisations The inclusion of patients with all major diagnoses leading to disease- and prematurity-related infant and childhood deaths, as well as compari-sons across the diagnostic groups, provides additional insight and understanding for healthcare professionals Previous studies in this field have frequently been limited to the hospital setting [1,3] or to a specific diag-nostic group [8, 14, 15] Our study is limited by its cross-sectional, primarily descriptive design incorporat-ing a retrospective chart review This approach does not allow conclusions to be drawn about care quality and quality of life at the EOL Generalisability is further lim-ited by the way that EOL care is often delivered in Switzerland Specialised PC/EOL care was offered in only 3 of the 13 hospitals where data were collected, and
no children’s hospices exist in Switzerland The study’s definition of EOL care as the last four weeks of life is
Table 3 Interventions and medications during the last four weeks of life
Total
N = 149 (100%)
Cardiology
n = 19 (13%)
Neonatology
n = 57 (38%)
Neurology
n = 36 (24%)
Oncology
n = 37 (25%)
p-value
Mechanical ventilation
ECMO
ECMO Extracorporeal membrane oxygenation, CAD Central access device, either venous or arterial
a
Information was missing for some cases
b
Across the four groups, based on likelihood ratio chi-square
c
Includes both standing daily dosages and as-needed orders
Trang 7somehow artificial, yet was justified by the literature,
ex-perts’ opinion and feasibility constraints The study,
therefore, provides insight in paediatric EOL care in a
limited time frame, not necessarily covering all aspects
of EOL care across a broader time period Known
reli-ability issues related to chart reviews were kept to a
minimum by utilising established and appropriate
mea-sures, resulting in few discrepancies in the data
col-lected However, the mixed quality of documentation
among healthcare personnel, resulting in incomplete or
missing data independent of data collection quality still
limits the study’s reliability [19] The comparisons
be-tween the four major diagnostic groups highlight
elements that warrant discussion
Medication and symptoms
Medication counts in our study were high, with an overall
mean of 14 drugs or as-needed medication orders during
the last week of life This number is higher than the
re-ported average of 9 drugs in a study involving 515
paediat-ric patients with a similar diagnostic profile receiving PPC
[3] A similar average number of 13.9 (SD = 8.9) of medi-cations used in the last week of life was reported in a study
of 30 children dying in an Australian hospital in 2001 Two thirds of the 30 children died in the ICU, which might have influenced the high numbers found in this study [23] We found that the medication count increased from the second-to-last week to the last week of life Thus,
it seems that the intensity of medical treatment increases
as the child nears death, a phase which is accompanied by
a greater need for pharmacological interventions, espe-cially for relieving pain, based on our clinical experience The high number of medications in the cardiology group was often due to the frequent need for CPR and a high prevalence of surgical interventions, which are also de-scribed in other studies with cardiology patients [15, 21] Although not perfectly comparable, symptom type and prevalence differed from the aforementioned study of 515 patients receiving PPC, in which pain was only the sixth most frequent symptom extracted from patients’ charts [3] However, pain has been reported to be the most fre-quent symptom in other studies with various paediatric cohorts in PC or EOL care [8, 14] Our study adds to existing knowledge by demonstrating that symptom prevalence is dependent on the underlying CCC and that
it can differ considerably
Hospital and community healthcare utilisation
Most patients (n = 130) stayed at least one day in hospital during their last four weeks of life Of those, 62 patients (48%) had at least one hospital admission and 10 patients (8%) had more than one admission This is a lower per-centage than reported in a recent North American study about trends in high-intensity EOL care among children with cancer [24] In this population-based study with a co-hort of 815 children diagnosed with cancer who died between 2000 and 2012, 143 patients (17.6%) of the pa-tients had more than one hospital admission within
30 days of death Compared with our oncology sub-group (n = 37), twenty-six patients stayed at least one day in hos-pital and 3 (11%) of them had more than one admission during their last four weeks of life
Slightly less than 50% of our study’s patients were at home at some point during their last four weeks of life Naturally, this was the case for very few neonates In light of the probably growing rate of prenatal diagnosis
of a life-limiting CCC, early initiation of PPC may allow better planning and implementation of specialised care services at home [25] Perinatal palliative care is an even younger specialty than PPC [25] and was not integrated
in the three PPC programmes in Switzerland A recent survey about the provision of services showed that perinatal palliative care programmes in the US were based in academic medical centres, regional and local hospitals, or community based hospitals [26] Back in
Fig 1 Symptom prevalence and comparison between the four diagnostic
groups ** = p-value < 0.001 based on a negative binomial regression
model.aAdjusted for mechanical ventilation.bAdjusted for enteral feeds.
c
Neonatology group excluded due to 0% of symptom presence
Trang 82013, Feudtner et al [13] showed however, that only
54% of hospital-based PPC programmes provided
pre-natal consultation [13]
Only half of the patients who spent time at home
re-ceived community-based healthcare services Recent
data from Germany and the US show that the
coordin-ation and provision of specialised palliative home care
can alleviate caregivers’ distress and burden [27], and
improve both the child’s [28] and the caregivers’ quality
of life [27] As reported by our study, community
nurs-ing care encompasses a range of service types The high
level of coordination with the leading team in the
hos-pital and the expertise required makes it especially
chal-lenging Subgroup analysis of our study’s at-home
population targeting facilitators for and barriers to EOL
care in the home setting has been performed and is
published elsewhere [29]
Implications
PPC is growing internationally and the provision of
con-sultation by a hospital-based multiprofessional PPC team
seems to be the favoured model of care [13] There is some evidence suggesting that PPC programmes provid-ing specialised services may reduce healthcare resource utilisation by reducing hospital admissions, shortening hospital stays, and lessening aggressive care to prolong life [30] Additionally, provision of hospital-based specia-lised PPC may shift and extend the care setting beyond the hospital [30] In order to provide good quality EOL care a high level of expertise with a good understanding
of the different illness trajectories, and efficient collabor-ation across a variety of paediatric subspecialties is re-quired Outcome measurement has to be introduced into practice and prospective studies are needed to evaluate meaningful family-oriented clinical outcomes, quality of care, and the impact of specialised PPC to advance clinical practice and research in the field [30,31]
Conclusions
Swiss paediatric patients, similar to what is reported from other countries, experience high-intensity EOL care with invasive interventions, high medication counts
Table 4 Hospital and community healthcare utilisation during the last four weeks of life
Total
N = 149 (100%)
Cardiology
n = 19 (13%)
Neonatology
n = 57 (38%)
Neurology
n = 36 (24%)
Oncology
n = 37 (25%)
p-value
Type of community care service
NA Not applicable
a
Across the four groups, based on likelihood ratio chi-square
b
Representing the cumulative hospital admissions in all patients
c
No significance testing conducted due to small numbers
d
Consisting of nurses, most of them specialised in paediatric and/or community nursing
Trang 9and high symptom prevalence Transitions between the
inpatient and the home care setting were experienced by
most patients outside the neonatology group
Profes-sional home care was only utilised by half of the
pa-tients/families The provision of specialised palliative
and EOL care services, including the capacity of
com-munity healthcare services were limited There is
there-fore a need for PPC services to be expanded to meet the
specific needs of seriously ill children and their families
in Switzerland
Abbreviations
CCC: Complex chronic conditions; CPR: Cardiopulmonary resuscitation;
DNR: Do not resuscitate; EOL: End-of-life; ICD: International Statistical
Classification of Diseases and Related Health Problems; ICU: Intensive care
unit; IQR: Interquartile range; PELICAN: Paediatric End-of-LIfe CAre Needs;
PPC: Paediatric palliative care
Acknowledgements
We would like to thank Anouk Dorsaz, Marie-Madeleine Minder, Simone
Keller, and Judith Wieland for their invaluable contribution in collecting the
large amount of data We also thank Heather Murray for her language editing.
The authors wish to express their special thanks to all the members of the
PELICAN Consortium who supported and facilitated the study conduction in all
participating institutions: Marc Ansari; Christoph Aebi; Reta Baer; Maja Beck
Popovic; Vera Bernet; Pierluigi Brazzola; Hans Ulrich Bucher; Regula Buder;
Sandra Cagnazzo; Barbara Dinten; Anouk Dorsaz; Franz Elmer; Raquel Enriquez;
Patricia Fahrni-Nater; Gabi Finkbeiner; Bernhard Frey; Urs Frey; Jeannette Greiner;
Ralph-Ingo Hassink; Simone Keller; Oliver Kretschmar; Judith Kroell; Bernard
Laubscher; Kurt Leibundgut; Reta Malaer; Andreas Meyer; Christoph Stuessi;
Mathias Nelle; Thomas Neuhaus; Felix Niggli; Geneviève Perrenoud; Jean-Pierre
Pfammatter; Barbara Plecko; Debora Rupf; Felix Sennhauser; Caroline Stade; Maja
Steinlin; Lilian Stoffel; Karin Thomas; Christian Vonarburg; Rodo von Vigier;
Bendicht Wagner; Judith Wieland; Birgit Wernz.
Funding
The research received funding from the following sponsors: The Swiss Cancer
League / Swiss Cancer Research; Nursing Science Foundation, Basel, Switzerland;
Federal Office of Public Health, Switzerland; Start Stipend Award, PhD Program in
Health Sciences, Faculty of Medicine, University of Basel, Switzerland.
Availability of data and materials
The datasets generated and/or analysed during the current study are not publicly
available due to ongoing subanalyses but are available from the corresponding
author on reasonable request.
Authors ’ contributions
EC and EB designed the study KZ elaborated the methodology, conducted
the study, under the guidance of EC and EB, had full access to the data and
performed the statistical analysis, and wrote the manuscript KZ, KE and AS were
involved in recruitment processes and data collection All authors, including SE
and NW, contributed to the interpretation of results, revised the manuscript
critically and approved the final version.
Ethics approval and consent to participate
Human Research Ethics Committees from the 11 Swiss cantons in which the
study took place approved the PELICAN study (leading committee: Kantonale
Ethikkommission Zürich, KEK ZH Nr 2012-0537) Parents of eligible deceased
children were informed and invited to participate in the study by the former
treating team, who also acted as gatekeeper as needed Participation was entirely
voluntary and written informed consent was obtained from all participants.
Consent for publication
Not applicable.
Competing interests
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Author details
1 Department Public Health (DPH), Nursing Science, University of Basel, Bernoullistrasse 28, 4056 Basel, Switzerland 2 Paediatric Palliative Care, University Children ’s Hospital Zurich, Children’s Research Center CRC, Steinwiesstrasse 75, 8032 Zurich, Switzerland 3 Department of Pediatrics, Inselspital Bern University Hospital, Bern, Switzerland 4 Health Division, University of Applied Sciences Bern, Bern, Switzerland 5 School of Nursing, University of Pittsburgh, 3500 Victoria Street, Pittsburgh, PA 15261, USA.
6 Institute of Higher Education and Research in Healthcare – IUFRS, University
of Lausanne, Route de la Corniche 10, 1010 Lausanne, Switzerland 7 Nurse Research Consultant, Department of Woman-Mother-Child, Lausanne University Hospital CHUV, Lausanne, Switzerland.8Paediatric Haematology-Oncology, University Children ’s Hospital UKBB, Spitalstrasse 33,
4056 Basel, Switzerland 9 Triemli Hospital Zurich, Zurich, Switzerland Received: 19 October 2016 Accepted: 29 January 2018
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